What is a \u2018timely\u2019 diagnosis? Exploring the preferences of Australian health service consumers regarding when a diagnosis of dementia should be disclosed

Rochelle Watson,Robert Sanson-Fisher,Jamie Bryant,Tiffany-Jane Evans,Elise Mansfield

doi:10.1186/s12913-018-3409-y

Rochelle Watson, Robert Sanson-Fisher + Show 3 more

Open Access

https://doi.org/10.1186/s12913-018-3409-y

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Abstract

BackgroundRecently the dementia field has shifted focus away from the early diagnosis debate in favour of ‘timely’ diagnosis. ‘Timely’ diagnosis disclosure takes into consideration the preferences and unique circumstances of the individual. Determining when diagnosis disclosure is ‘timely’ may be particularly complex if there are differing views between the individual, their family, and their health care providers regarding disclosure. This study explores the preferences of consumers regarding when a diagnosis of dementia should be communicated.MethodsA cross-sectional survey was conducted with English-speaking adults attending outpatient clinics at an Australian hospital. Participants were recruited by a research assistant in the clinic waiting room and invited to complete the survey on a web-connected iPad. The survey included questions examining socio-demographics and experience with dementia. Two scenarios were used to explore preferences for timing of diagnosis disclosure.ResultsOf 446 participants, 92% preferred a diagnosis of dementia to be disclosed as soon as possible. Preferences were not associated with socio-demographics or previous dementia experience. Most participants also preferred disclosure to occur as soon as possible if their spouse or partner was diagnosed with dementia (88%). There was strong correlation between preferences for self and preferences for spouse (0.91).ConclusionsThese findings provide guidance to health care providers about preferences for disclosure of a dementia diagnosis, and may help to overcome potential barriers to timely diagnosis. As the prevalence of dementia increases, consumers’ preference for diagnosis to occur as soon as possible has important implications for the health system.

Highlights

The dementia field has shifted focus away from the early diagnosis debate in favour of ‘timely’ diagnosis
Where early diagnosis disclosure assumes all people with dementia want to be told their diagnosis as soon as possible, timely diagnosis disclosure treats people with dementia as individuals with unique perspectives
This study examined among a sample of health service consumers: Aim 1: Preferences regarding the timing of diagnosis disclosure for dementia in relation to a) themselves, and b) their spouse; Aim 2: Whether socio-demographic characteristics and previous experience with dementia are associated with preferences for diagnosis; and

Summary

Introduction

The dementia field has shifted focus away from the early diagnosis debate in favour of ‘timely’ diagnosis. ‘Timely’ diagnosis disclosure takes into consideration the preferences and unique circumstances of the individual. The concept of timely diagnosis refers to disclosure of the diagnosis at the right time for the individual with consideration of their preferences and unique circumstances [2]. Some people may wish to be told their diagnosis as soon as clinical tools indicate a probable diagnosis of dementia, while others might prefer not to be told they have dementia at all. Both scenarios may represent timely diagnosis disclosure according to the perceptions of the consumer

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